Utah Hemophilia Foundation

I was born in Sasebo, Japan on June 7th 1970. My grandfather was stationed there while enlisted in the United States Navy. My mother had me at young age, so I grew up being raised not only by a single mother, but also by my grandparents. My uncle and aunts and uncle were more like my older brother and sisters, so there was no lack of being spoiled because not only did I have my mom, I also had my grandparents, aunts and uncle to get what I wanted. And if you asked them, they would probably tell you I was pretty spoiled, but I can honestly say, “It was their fault.”

After coming back to the states we moved to Cortez, Colorado. At the age of two I was diagnosed as having severe Hemophilia A. The only reason we even had an idea I could have it is because my grandmother’s sister had two boys that were already diagnosed with the disease. They like me had bruises that took a long time to heal. So my grandparents put two and two together and had me tested for it. Luckily factor VIII was starting to become available, so I was able to get the treatment I needed. The only down side is back then you had to go to the doctor or the emergency room to receive a transfusion. Believe me, as a kid I hated going to the doctor to get a shot. It would take four people to hold me down. Still to this day I have a phobia with cotton balls because back then they kept them in jars, and every time they would reach in to get one, the little fibers would pull apart, and I knew a shot was coming. So now I can’t even touch a cotton ball or think about the fibers pulling apart--I’m getting the “HEEBBY JEEBBIES” just talking about it.

As I grew up I experienced different scenarios with doctors who thought that people with hemophilia should be immobilized to control bleeding—that any kind of exercise was bad and would cause more damage. They even had us wear what we called “waffle stompers,” which were hiking boots that laced up around your ankles. The idea, again, was to keep the ankle immobilized. While growing up I still played like a kid and my family never really limited me--I was just told to be careful. The big thing for me back in the 1970s was a TV show called The Six Million Dollar Man, starring, Lee Majors (a.k.a. Steve Austin, the Six Million Dollar Man). For those kids who don’t know what I’m talking about, he was a man who got into an accident lost his legs, one arm, and his right eye. The government thought he would be the perfect candidate to receive bionics to replace the missing and damaged parts. This gave him super human strength, speed, and he could see for miles with his bionic eye. The only catch was he had to work for the government as an undercover agent and help people in need. So as a kid I ran around in slow motion making the bionic sounds and jumping off of dirt hills and boulders acting like the Six Million Dollar Man.

When I got to the ripe old age of eight years old, my mom got married. Up until this time the only “dad” I knew was my grandpa. It took me a little while, but soon I was calling my new step father, “Dad.” He was a lot stricter than what I was accustomed to, and in a lot of ways now looking back, that was just what I needed. When my dad came into my life, I was at the point where I couldn’t even run anymore. I was limping around all the time and my ankles were in a lot of pain. The doctors tried casting them thinking that “immobilization was the key to recovery.” My dad finally said enough was enough. He knew that my muscles needed to be built up in my legs and that my ankles were arthritic because they were not moving from being immobilized too much. As soon as the casts came off he gave me a shot of factor VIII, took me out with tennis shoes on, and we played baseball and football. I hated him at first. I thought he was being mean. I would give up, telling him I couldn’t run because it hurt. He would push me even harder, telling me, “Don’t you dare give up. I won’t let you quit. Now quit your whining and let’s play some ball.” I can remember getting mad at that point, and I would start chasing after him, wanting to hit him. He would run away for a while and then turn around and wrestle with me for a bit. Then he would tell me, “Do you realize what you just did? You just chased me all over the yard, running after me even after you said you couldn’t run anymore.” And then he added, “You’re only limiting yourself. If you want it bad enough, you can do it. Don’t ever give up, no matter what people tell you. You are only as disabled as you allow yourself to be.” From that point on I played baseball and football with my friends, and I ran all the way up until I had to have my ankles fused back in 1998. But I know that if my dad hadn’t pushed me when he did I would have been crippled and missed out on all the fun of my childhood years.

 Over the years with the cost of the medicine and needing to stay on Social Security Disability and sometimes Medicaid (to help pay the costs of the factor VIII and other medications) made me feel like I was being held down. It was making me feel like I could never have anything. I always felt like I was a burden to my family because we always had to go without certain things, because if I had too much money, I no longer qualified for assistance. Now that I’m married and have kids, I feel like I’m not doing my part to make their lives better. It’s not their fault that I’m disabled; why should they have to go without like I’ve had to do to survive? Not being able to help my wife with the bills. Not owning our own home because of poor credit from unpaid medical bills due to lack of funds. I was just plain feeling sorry for myself.

Over the years I had forgotten what my dad had taught me on that day. One morning I woke up asking myself, “What do I do? I have all these things holding me back, with no end in sight. I can’t do it.” Then it all came back to me, what my dad taught me. His words hit me like a ton of bricks, “You’re only limiting yourself. If you want it bad enough, you can do it. Don’t give up no matter what people tell you. You are only as disabled as you allow yourself to be.” At that moment I decided enough was enough. I was going to beat this thing or die trying. I put on my tennis shoes and decided to go back to school to become an X-ray technician. I enrolled in Stevens Henager College in March of 2009, and I am now maintaining a 3.97 grade point average and on the Dean’s List. I will be graduating in September of this year with an Associates Degree in Medical Specialties—X-ray technician being one of them. After graduation I will have a job in the radiology field working toward ultra sound, CT scan, and eventually MRI. I know it’s going to be a lot of work, but I welcome it. I will turn 40 in June of this year, and even though I can’t run physically anymore, I guess you could say I’ve hit the ground running towards a career, and I will run until I reach my goal. Back when I was a kid, I ran because I wanted to hit my dad, because I thought he was being mean. Now as an adult, I’m running towards a career that will beat the disability that I thought was being “mean.” But in the end I learned that both my dad and my disability were trying to teach me the same thing, and in the process made me an even stronger and more determined person.

So my message to all those with disabilities is just what my dad taught me: “You are the only one that can limit yourself. If you want it bad enough, you can do it. Don’t give up, no matter what people tell you. You are only as disabled as you allow yourself to be.” May God be with you and NEVER EVER give up!